Run Committed

Painted Into A Corner…

There is a certain freedom I feel when I run – the rhythmic beat of my feet, the wind in my hair, the straining of my muscles and lungs, all contribute to a feeling that I am free to go, at least for a short while, wherever my feet may take me. For a while, running served solely as my version of therapy. Along with the everyday struggles we all experience in life, our family also has an autism diagnosis. I will readily admit I struggled with the concept that my baby girl was not going to lead the life I had imagined for her. It took me some time to adjust my way of thinking…evolve, if you will. Initially running gave me an outlet, a place where I could funnel all my frustration and anger and return physically spent but mentally refreshed and recharged. It wasn’t long thereafter that I realized that I could use my running, the activity that had given so much to me over the course of a year or two, and use it to help my daughter and those like her. Running would not only help me deal with my daily struggles with my daughter’s autism diagnosis, it would help make the world a better place for her.

In the very beginning of our family’s journey with autism, my first thoughts were focused on a cure. I was scared, not for me, but for my baby. How on God’s green Earth was she ever going to make it without being cured of this…this…thing? My initial reaction to Brooke’s diagnosis was because there was so little out there in the way of awareness and accommodation. For months I would cry when nobody was looking, whether it was in the bathroom in the middle of the night or during the day when I was home alone.

Eventually I came to understand that what was best for my baby was autism awareness. What would a cure mean anyway? Who would I be left with? Through our initial interactions with Autism Speaks, I became enamored with their awareness campaign and their dogged pursuit of health insurance reform on a state by state basis. In 2010 I began running for Autism Speaks in support of these two things, knowing that awareness and health insurance coverage for autistics would make my daughter’s life easier, better, more accessible.

Since Fall of 2010 I have run three New York City Marathons, two Boston 13.1 Half Marathons, one 100 Mile Ultra-Marathon and streaked 167 straight days while using the Charity Miles App, raising thousands of dollars, all in support of Autism Speaks because I believe in awareness and I believe in health care coverage for autistic people.

Awareness leads to understanding which in turn leads to compassion and empathy which hopefully evolves into acceptance and inclusion. Health care coverage means families worry less and have more time to focus on what is most important – their family.

Suzanne Wright has painted me into a corner. She has made it clear that her focus is on children and on a cure. She has chosen to ignore self-advocates and the whole of adult autistics. I understand that the autism she and her family experiences may be different than that of mine. I even understand why some families seek a cure – I was one of those people once upon a time. There’s a reason why they seek it, and for some, it has nothing to do with autism and more to do with how society, and certain advocacy groups, views autistic people – there is a difference.

Some day, Brooke will be an adult. She will still be autistic. My hope is that she will be able to advocate for herself and others like her if she so chooses. I hope that people will listen to her just as intently then as they do now.

Suzanne Wright has painted me into a corner because in her plan, there will soon be no room for Brooke; there will be no place for her in Suzanne’s world view. Why does this matter? Because Autism Speaks has the biggest platform, the loudest voice and the most money.

Throw me a bone, Suzanne. Tell me you understand that there is more than just one autism. Tell me that you understand that our children will grow up to be adults. I know many parents mourn the child they thought they were going to raise. Honestly though, how many parents, of any children, actually end up raising the kids they imagined they would have.

There are times, Suzanne, where I and my family feel lost. That doesn’t mean we are lost. There is a huge, HUGE difference. Throw me a bone, Suzanne. Tell me that the opinions of autistic adults, no matter how they communicate, matter. Tell me that you’ve gone back over your last op-ed piece and realize that your words were too harsh, too exclusive, too narrow. Tell me you want John Robison back and that you promise to add several more autistic adults to your board so that you can better direct what it is that Autism Speaks stands for. It’s right there in the name, Suzanne. Autism Speaks. Please, throw me a bone.

Running is where I find freedom – it is a joyful experience for me. You can see it here after 26.2 miles of spreading autism awareness.

The New York City Marathon 2013…after 26.2 miles of spreading awareness…

Where does that energy come from? My daughter…my autistic daughter who will someday be an autistic adult. Someone who is only about 10 years away from not fitting into your model anymore.

What am I supposed to do Suzanne? What am I supposed to do? Throw me a bone, please, because you’ve painted me into a corner.

12 Responses

Hello! Wonderful post detailing what many families are feeling with Ms. Wright’s announcement of a “national plan” and “500,000 autism family city.” It’s not a one-size diagnosis, nor does AS take into account the many autistic self-advocates and their experience. Between this and their allowing the JRC to be a vendor in their NYC autism resource fair, I’m pretty much done. Check out this post on the JRC by an adult self-advocate. I don’t agree with her on many things, but STRONGLY support her in this: http://www.autistichoya.com/.

This is where part of my dilemma lies Dino – I have run NYCM for Team Up with Autism Speaks every year since 2010. The program is run by some dedicated, compassionate people. You can find them online. There are, however, many, many charities that have entries to NYCM. You should be able to go to NYCM’s website to find the list.

I suggest looking into the Organization for Autism Research. They have a Running for Autism program at several races. They have more positive messages about autism and autistics. Including developing materials for inclusive classrooms to explain autism to NT kids, they sponsor research grants for all aspects and issues related to autism, childhood through adult. They also have a scholarship program to help autistic teenagers attend college or other post high school education programs. They have information on their website to help direct parents to research studies on autism and how to read them–so they do not get sucked into pseudoscience. They too are currently suffering from a deficiency of adult autistics on their Board, but I think it would be a wonderful place for some of the technical/science minded adult autistics to get involved and help direct grant money to applied research to benefit autistics across the spectrum. They also could probably use a little help in their messaging from autistics, but certainly nothing of the nausea inducing demeaning and deprecating nature of Autism Speaks’ latest missive.

This is one major reason I hate everything I hear about Autism Speaks. I am an adult with Aspergers, and have spent my whole life ( until last year) without a diagnosis. There IS no cure for autism. There is improvement, in that an individual feels happy to be who they are and works on minimising the stressful effects of certain things so as to better enjoy life. I will always be autistic. I have come a long way since I was a scared, socially stuffed kid. I have adapted. But those who speak of a cure are kidding themselves. Life will always be hard work – doesn’t mean I don’t love life though!

My 2 cents? If you have to go digging for a reason to still support them, it’s time to find a new charity. Change doesn’t happen when we stay put out of comfort…change happens when we stand up for what is right.

I ran Chicago for OAR, which is Run for Autism http://www.researchautism.org/news/run/ I never liked Autism Speaks. I hate the blue puzzle piece. It’s not our world. Do I believe in a cure? I believe there is help for families and it’s not coming from AS.

I have never given a dime to AS and never will. This organization has been horrible from day one IMO. Running and walking for them while lining the pockets of the big wigs at AS–NO THANKS! Give your money to other autism organizations or make a donation to an excellent ABA center.